~ my distracted mind…

For weeks, even months I have been thinking about writing a post about the things I did during the rest of my stay in Italy. Yet I have not felt like talking. Unusual for me since I am quite a chatty gal. There have been too many distractions in my mind for me to focus. At this moment I have lists all over the table and am starting to get my head straight about life and what to do with myself. I will get around to writing posts about my Italian adventure soon. 

Since returning to Canada a few weeks ago I have had another follow-up, this time with my original hematologist. It’s nice to have her back. I was thrilled the day I had my blood taken, sounds silly, but the nurse was skilled and successful on the first try. I could even hear the blood gush into the tube! Woohoo! Gross but made me very happy! She is my favourite nurse!!! Always a relief to learn that my blood is normal and that the doctor is happy with how I am doing overall. 😃 I am almost at the one year mark and this is important. The first year is the most likely period for recurrence. There is that word, this is part of what has been distracting me for some time. 

Recurrence. As time passes and I get closer to a full year beyond treatment I struggle with this word. I chose to keep to myself and not get involved with support groups and such during my treatment period. Yet I did know of a few others at different stages of treatment at the same time and this is what has become difficult for me. Over the last six months or so I have learned of three people who have experienced recurrence. I imagine that it is a cancer survivor’s greatest fear, and for as much as one tries to be positive, live in the moment and move on with life. This word presents a reality that others just cannot understand. To learn that one person had passed away last month, another is in palliative care and one in treatment again is difficult to process. Here I am just back from a few months rest in Europe and trying to decide what to do with my life, while my mind feels numb. Moving forward feels difficult when someone I haven’t met yet feel I know because our stories were shared between us via a mutual friend, we were each others cheerleaders, is near the end of his life. It’s hard to hear that someone who handled their illness and treatment will such grace has had to face it again so soon. I cannot put my feelings into words right now. 😔

Another distraction is my hand and wrist pain which continues. I have agreed to take the prescription the hematologist has recommended. The first day was comical, I was pretty much stoned from one pill! ha! and I felt nauseated and my face was tingling! Thankfully the yucky feeling only lasted a few days. It’s been almost two weeks and I am not noticing much relief yet, I do remain hopeful. I saw a neurologist last week, he had no answers. My case is odd. So I have been referred to a physiatrist. Now to wait for an appointment with him. Thankfully I have free time and can be on a cancellation list rather than wait 6 months for an appointment. 

I am now experiencing the entangled feelings of fear, frustration and what on earth are my transferable skills!? in looking for some way to earn an income and move forward in life. Preparing for a job search is a process that I am sure no one is fond of. It is enough to drive one crazy! I know because I was already half way there!  😜

In the meantime I am trying to replenish my sparkle levels and see the bright side in things and not get too wound up about them. I am still adjusting to the new normal that is my life. My body is stiff and makes weird crackling noises when I move. My hair is a daily adventure that takes way too much of my energy. This new-found fear of certain words is a tough one, trying not to let them get the best of me. After all they are just words. 

I sparkle on…one day at a time.   😊

~ the quest takes a new path…

Wow! It is exactly three months since my last post and I am still unwell. Since then I continued to cough endlessly and therefore have had a variety of tests. Most valuable seemed to be the CT scan which identified a 7x8cm mass in my left lung. This explains the chest pain, shortness of breath and fatigue. In summary I have now had 5 chest x-rays, multiple blood tests, 2 ECG’s, been tested for TB (the result was negative), 2 CT scans and the latest a fine needle lung biopsy while in a CT scanning machine. 

There is one thing I have consistently commented about since I began to feel unwell in January and that was the spot of pain in my chest. This pain was stronger in the beginning and over the Easter weekend it had released its grip, a little. When the mass was identified it explained why I have this spot of pain as it is pressing on the chest wall. 

Flying home was a little nerve-racking, especially since there is no direct way to get to Saskatoon. I have to say the staff at Air Canada were kind and attentive to make sure I was okay while flying. I returned home with all my Italian medical documents and scans on disk ready to see my doctor. More x-rays and blood tests, it feels strange not taking a friend along to interpret/translate. 

Last week I had an appointment with a respiratory specialist. She reviewed the CT scan with contrast and the various x-rays and consulted with another specialist. Then we sat down to chat. The usual questions, family history, work history, and previous health issues, then onto describing the current health issue. I found it interesting that she asked me three times in this line of questioning if my family lived nearby. Nearly 2 hours had passed when we arrived at the time to discuss what she believes is the issue. I knew I was present in the room as words such as biopsy, lymphoma, lung cancer and treatment plan hung in the air and didn’t seem to penetrate my mind. This was so surreal. I felt like a character in a book or movie being in this room hearing this news, thinking is this really happening? it’s just a cough. The doctor could tell that I was a little too calm  for just having had this particular conversation. She asked if there was someone I could spend the rest of the day with, I looked at her quizzically. She continued to say that this was a lot of information we discussed and it would be good for me to be with someone. Then reality hit. I became a puddle. After I left the doctor’s office I stopped for the blood tests she requested and then slowly walked to my car in a zombie like state. 

Once I reached the car, I sent a few text messages then drove to the pharmacy. The pharmacist said something about the prescription, I remember looking at him and saying I don’t have a cold, call the doctor if you have questions. I arrived at my house still stunned, did my best to collect myself and called my parents, my mom took the news well as she was expecting something since I had been coughing for so long. A few friends came to my house that day. It was a day of shock and emotion. 

As I continued to share this news with friends and family, the response has been wonderful, kind words and offers of help. When people see me they are surprised and often comment that I look good. I laugh and say what did you expect? They expect me to be frail and thin. Nope, I am my usually smiley and jolly self. It is interesting that people seem to believe that you have to look poorly to be unwell. Not so at all. I move a little slower and speak a little softer since I struggle to get enough air to talk as much as I would really like to, but that’s about all that is different. haha

I have made a promise to myself, and I ask my friends and family to do the same…No internet searches for any information regarding my illness and treatment. Promise!  I have doctors to ask questions of and I will ask as things progress. Currently I don’t really know what lymphoma is and that is ok. When a diagnosis is confirmed I will ask questions. For now my energy is better focused on eating well and resting. 

Friends are great. A group did the spring yard cleaning and planted flowers, shrubs and my vegetable garden last Saturday. It was nice to see everyone. An afternoon of activity like that wears me out, even though I was just walking around and talking. I fell asleep that evening at 6pm and stayed in bed all day Sunday. This is my pattern, one day of activity will mean two days of rest to recover. This is something that is difficult for others to understand.

Being unwell is strange. Every day people ask the question, How are you feeling?… I feel good, with the exception of pressure/pain in my chest and the challenges I have with breathing. This is how I have felt for months. I have learned to respect my physical limits. I am happy and do what I can within my physical limits. If I feel tired, I rest. Thankfully I now have medicine to quell the cough. This is a blessing. My body has been so tired from coughing daily for months. This helps me sleep and being rested helps me to maintain a positive attitude. 

Two days ago I had a biopsy. The doctor chose the least invasive method, a fine needle lung biopsy performed by an interventional radiologist while the patient is in a CT scan machine. This procedure is pretty cool. I was not sedated which I was a little unsure about. The worst part was the needle for the freezing into basically the centre of my chest. Ouch!!!! I asked if I could swear because it was wildly painful. After the freezing set in no problem. The doctor asked how squeamish I was and I said don’t tell me anything you are doing, talk to me about something else. So we talked about my time in Italy. Before I knew it the procedure was done and I had 4 hours to relax, since I was not allowed to move for that period of time. Nurses were checking on me regularly as I read a book and had a few naps. 

Recovery has been a little painful after this biopsy. Every way I move I can feel a pull in my chest. I think this mass did not appreciate being disturbed. It will heal. 

Now the waiting for results, apparently these take 5-10 business days. So two weeks. After being ill for months now, two weeks will pass quickly. Hopefully then we know what we are dealing with and can make a treatment plan. 

My new physical limitations are a little frustrating, it is the little things around the house that I can’t do that irritate me. Such as taking out the garbage and recycling, the bins are too heavy for me to take to the curb. At 4:30 this morning I remembered it is garbage collection day, so as I sit here typing I am listening for my neighbour to take his bin out so I can ask him to take mine out as well. Mowing the lawn, making a bed, even laundry is more physical than I had realized before. I have taken up ironing, the linens in the guest bedroom look fantastic. haha  This is where I cannot get stuck on being proud or stubborn and must ask for help.  

Food is another interesting aspect. One of the first things people offer is to make food. Interesting since food is associated with comfort. While wanting to eat healthy I realize there is no single plan that appeals to me, so I am going to take the parts I believe are beneficial and create a hybrid eating plan for myself. I’ll share my eating plan as things progress as well. 

The challenges of communication. I am very fortunate to have so many people who care about me and send me well wishes.  I want to keep friends and family informed yet I do not want to be sending and responding to messages all day long. While talking in general tires me. Please have patience since I may not respond quickly or forget to respond at all.  

I sparkle on…one day at a time.         🙂 

Sparkling Snow Angel…

Back in the land of snowy winters and making the most of it! Snow Angels! My work of art was quickly filled in with blowing snow. 

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While I work on the details for the next phase of life, I have given myself a new challenge. To use the various foods stored in my cupboards and freezer before buying new items, other than fresh foods. This challenge is exciting, I look forward to trying new recipes and being creative to use these items I felt I needed to have on hand…just in case…you never know when you are going to have a craving for smoked oysters!  🙂

After three months in a small apartment and living very comfortably with only essentials, I look around my house and realize I have way too much stuff! Unnecessary stuff! Time to purge! Donate or sell, whatever it takes to reduce the amount of stuff I did not miss and clearly do not need. Time for a simpler life. 

Thankfully spring is around the corner…okay I may be delirious on that thought. Regardless, I am going to enjoy the remainder of winter, more snow angels and walks along the beautiful river bank as the days get longer and the temperature rises. I may even prepare to have my first ever yard sale this spring. Oh my, what am I thinking, that is not my style. I think I will make donations instead, it is nice to think that the items around my home may add a little sparkle to someone’s day. 

Ciao ciao!